Well I just spent the last hour reading through previous posts! I learned so much! What an informative thread! I am sure thankful to be in Canada where I don't have to worry about infusion costs.... that's brutal.

Waiting on the call from the infusion centre so I can get in! I'm going to call them myself on Monday, even though Biogen assured me that they'd call me ;) I am impatient. Especially because I am pretty sure a fall that caused me to have bursitis in my hip seems to be making some other symptoms worse as well. Pre-fall (a week ago) I was walking with a cane. Now even though my hip is almost better I can't walk without a walker. Trauma seems to cause relapses for me so I wouldn't be surprised if that's what's happening.

Even if you are JC+ the risk is low for the first 24 months - go for it, get all you can from the drug, it is very good.

First infusion Thursday morning!!!!!

Good luck - hopefully no side effects. I have never had any :)

Infusion #1 complete! So easy!! So much better than Beta injections.

Once it was over I felt like I'd been hit by a truck... really tired. I woke up with a headache this a.m. (not normal for me) and I guess my Tylenol had worn off because after the infusion it came back with a vengeance! Advil took it away though and 2 hours after I felt like normal.

Also I met someone there! A woman with MS who finished her infusion before me came over and introduced herself and we had a good chat :) It was really nice to talk to someone who knew what it's like (albeit our diseases are manifesting quite differently).

So overall, a very successful infusion and I'm really hoping that over the next six months I either don't get worse or even start to feel a teeny bit better (please please please!!!)

msbelle,
I noticed between 4-6 infusions I had more stamina, better balance and at 7 months my MRI showed no new or active lesions and some of the old were smaller. I hope you do at least as well as I have :hug: (progression halted, too and that's major :))

Linda

From memory it was a gradual but definite improvement for me. I didn't even notice it at first, but when I got to six months, I suddenly thought - wow I haven't had this much energy or felt this well for years. It wasn't so much a 'light bulb moment' - just a steady improvement, that once I thought about it blew me away.

Hope you are feeling good today - but better feelings will hopefully creep up on you :)

Well I'm JCV + :( Thought I would be, I'm positive to everything it seems. 0.69 is my titre level, they will keep an eye on it with blood tests every 6 months (like they do for everyone). After a year my neuro says chances of PML go up for me if I continue on Tysabri, so we will do a risk-benefit equation when that time comes.

The protocol in Australia, is that a titre level of 1.5 is the cut-off amount for safe use of the drug (I am 2.406 - grrr.....but I have still been taking it - naughty).

Good luck with it all -- the incidence of PML is still very low for the first two years - get all the benefits you can I say!

It's all about what risk level you can live with - just make sure you know all the risks so you can make the most informed decision.

Lynn- How long have you been on it for? And have your titre levels gone up since starting or have they always been that high?